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Advocates ask federal judge to order more state resources for developmentally disabled care

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JUDICIAL INTERVENTION SOUGHT TO FORCE ILLINOIS TO PROVIDE CRITICAL RESOURSES FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES

The State of Illinois is failing to fulfill its promise to people with disabilities to provide opportunities to live integrated in the community, according to a recent filing in federal court. The filing in Ligas v. Norwood asks a federal judge to compel the State to provide the resources necessary to comply with the Consent Decree in the case. The action on behalf of people with developmental disabilities specifically notes that low wages being paid by the State to disability service professionals prevent people with developmental disabilities from living meaningful lives in the community. The Americans with Disabilities Act requires the State to assure that people with disabilities can live in the most integrated setting possible. The filing makes clear that Illinois is failing this test.

Funding for people with developmental disabilities has been continued at past levels during the current budget impasse because of court orders. But that funding, as the filing shows, has been woefully inadequate to accomplish the mandates of the Consent Decree. As a result, an Independent Monitor in Ligas has found the State out of compliance with the Decree for the last two years. […]

The court filing details troubling reports from family members of people with disabilities and their service providers documenting the real human suffering and impact of the insufficient resources provided by the State.

Community reimbursement rates have been frozen for nearly a decade, while costs continue to escalate. The low rates have created crisis conditions in the staffing of these services. With insufficient staff, services to people with developmental disabilities are cut short. People—who are supposed to be integrated into the community—are instead finding themselves increasing isolated and segregated. The homes and facilities have been forced to decrease staff ratios, frequently to only one staff for 4-8 residents. This means that staff cannot regularly take the residents out of the house and they cannot work on building skills and independence. They are left with simply trying to maintain safety. Instead of living full integrated lives, many of these class members are suffering enormous hardships, including social isolation, a dearth of meaningful activities, a lack of skill development (and, for some skill regression), and, in many instances, anxiety and depression.

Background is here. The new legal filing is here.

* The AP has the administration’s response…

…Meredith Krantz of the state’s Department of Human Services said the state disagrees with the monitor’s findings, saying that Illinois has and “will continue to follow every court order” regarding the care of those with disabilities. Further, she said the state has “submitted all payments in question and look to the (state) comptroller’s office to ensure they’re processed.”

“The (Bruce) Rauner administration remains committed to moving individuals with developmental disabilities, mental illness, or physical disabilities out of institutional care and into community settings while ensuring those individuals receive the best care possible,” she wrote.

posted by Rich Miller
Monday, Apr 10, 17 @ 11:11 am

Comments

But for consent agreements, these services would have been as decimated as the rest of the human services system. Of course this, along with pension payments and other mandated spending, are things Rauner would like to go away.

Comment by Earnest Monday, Apr 10, 17 @ 11:14 am
Illinois has a long history of doing pretty much nothing to improve the lives of people with developmental disabilities unless the Feds or a court orders it. I understand that right now, there are over thirty thousand individuals with developmental disabilities on the state’s waiting list for services of any kind.

We continue to compete well in the race to the bottom.

Comment by Aldyth Monday, Apr 10, 17 @ 11:18 am
Having utterly failed in its job, Equip for Equality sues the State of Illinois for more money for CILAs.

E for E loves to say it is the Federally designated Protection and Advocacy Agency for Illinois.

But it did NOTHING to protect the residents of the community homes (CILAs) so subject to abuse as detailed by the Chicago Tribune.

Equip for Equality was spending its time instead on trying to close the Jacksonville and Murray Developmental Centers.

Who will start a Court case against E for E for not doing their job?

Comment by winners and losers Monday, Apr 10, 17 @ 11:23 am
Actually illinois provided first class care to those with developmental disabilities at places like JDC but as mentioned above, the advocates fought to close those places & get residents transferred to facilities that simply couldn’t handle the job. Nice work!

Comment by Wilson Monday, Apr 10, 17 @ 11:40 am
Almost 10 years without a rate increase for CILA’s and ICFDD’s. In the bottom 10th of the states in regards to funding for services. State operated facililities receive 3 to 5 times as much money to serve many of the same individuals community agencies do. The situation is deplorable and, yes, the Gov would just like it to go away. The only way to get rid of the court ordered payment priority is to increase rates to agencies and to pass the $15 per hour DSP wage increase. Committee hearing last week highlighted care and rate problems. I love the feel good stories about individuals with disabilities, but the reality is that most will continue to need significant support from federal and state sources to be able to live a meaningful life….and the way HHS is talking, Illinois will take a major hit when they implement a block grant program. Think, for a minute, of having a child with disabilities living in Illinois and after school days are over, facing the daunting task of continuing ~ til you or your child passes ~ ensuring their health and safety…..\

Comment by Anonymous Monday, Apr 10, 17 @ 11:49 am
Forgot to fill in my nickname. The state op vs. community has been answered throughout the country. Money needs to follow the person into the community.

After being an administrator of a community program for many, many years I am terribly disappointed in the DHS officials these days. I see no evidence of their pushing for more funds. For them to deny recently that they didn’t know there was a problem with community-based wages is ludicrous and insulting to DSP’s, agencies and families.

Comment by retired guy Monday, Apr 10, 17 @ 12:00 pm
retired guy: Read Olmstead (the decision itself, not what anyone says it says).

The Supreme Court decision does NOT require the closing of any option, but instead reinforces options.

Read the concurring opinion of Justice Breyer which details what a terrible thing it would be if the decision were to be interpreted in just the way that retired guy and others have chosen to interpret it.

Comment by winners and losers Monday, Apr 10, 17 @ 12:10 pm
DHS response is no surprise as Gov. Rauner vetoed livable wage legislation to address this last year. Agencies can’t hire because wages are poverty level for difficult and responsible work. The Rauner administration needs to offer a solution or let the courts run services for the disabled.

Comment by Jeff Park Mom Monday, Apr 10, 17 @ 12:15 pm
Justices Breyer (more liberal) and Kennedy (often swing vote) in their concurring opinion in Olmstead -

“It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive for fear of litigation, to deprive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”

That is exactly what happened in Illinois.

Kennedy and Breyer pointed to mistakes in the past:

“The depopulation of state mental hospitals has its dark side. According to one expert, ‘For a substantial minority…deinstitutionalization has been a psychiatric Titanic. Their lives are virtually devoid of dignity or integrity of body, mind, and spirit. Self-determination often means merely that the person has a choice of soup kitchens. The least restrictive setting frequently turns out to be a cardboard box, a jail cell, or a terror-filled existence
plagued by both real and imaginary enemies.’ ”

As part of the majority in Olmstead, Kennedy and Breyer stated:

“The opinion of a responsible treating physician in determining the appropriate conditions for treatment ought to be given the greatest of deference.”

“In light of these concerns, if the principle of liability announced by the Court is not applied with caution and circumspection, States may be pressured into attempting compliance on the cheap, placing marginal patients into integrated
settings devoid of the services and attention necessary for their condition.”

Comment by winners and losers Monday, Apr 10, 17 @ 12:17 pm
If DHS were in charge of the state’s highway system, their answer to potholes and unsafe bridges would be to re-write the Rules of the Road.

Comment by 100 miles west Monday, Apr 10, 17 @ 12:22 pm
And so we advance towards becoming a monarchy with the judiciary as the monarach and our elective officials carrying out trivial tasks to justify their paychecks as the judge(s) make the real decisions.

I am absolutely in favor of advancing community based care as opposed to large institutional settings but it’s fair to say, yet again, if more money is needed, who pays. Will it always be the
financially strapped and shrinking middle class which gets sent the bill while the rich get richer. If it’s Illinois, I guess it will.

Comment by Cassandra Monday, Apr 10, 17 @ 12:33 pm
Attempts to make this an institutional vs community issue is misleading and a disservice. That debate on the national level has been had.

This is exclusively about improving community care and options in the community.

Comment by Waffle Fries Monday, Apr 10, 17 @ 12:58 pm
Illinois has underfunded its community developmental system for the last 20 years.

During this time, comparing cost-of-living increases, community programs are 51% behind and state operated facilities did slightly better. Illinois asks the community to do more but is not willing to pay for it.

The demographics do not bode well for state institutions. Younger individuals are not choosing institutions to live out their lives. In 1997 there were 3400+ individuals residing in Illinois institutions. Today, there are less than 1700. One does not need to be a mathematician to project when that number goes to zero.

Unfortunately, both Democratic and Republican administrations have refused to plan for this eventuality. Per capita institutional costs have risen from less than $100k per person in FY 97 to over $230,000 in FY 17. By 2040, if the Governors and Legislatures continue down this path, there will be one person left in our state institutions, costing $600,000,000 per year to serve.

The sheer economics will force a change well before 2040. Instead of relying upon lawsuits, would we not be better off with a real plan?

Comment by BobO Monday, Apr 10, 17 @ 2:19 pm
BobO - What about the individual choice that Olmstead requires?

The cost figures are highly misleading. As people were moved out of the Jacksonville Developmental Center of course the cost per person remaining increased.

This is part of the problem.

The ARC and others sold CILAs as saving money, ignoring the fact that the vast majority of people at JDC and other SODCs needed extensive and expensive 24 hour services.

So we move them to CILAs not equipped for that, then we say we need to vastly increase pay to $15/hour, and vastly increase other payments to CILAs.

So that State payment for a person at a CILA with 24 hour services (RNs, fully trained specialized staff, dealing with PICA - attempting to eat any item whether dirt or metal, etc. - plus extreme conditions that many people do not know exist) is MORE EXPENSIVE is a very small CILA than it was at the Jacksonville Developmental Center.

In other endeavors, this is known as bait and switch.

Comment by winners and losers Monday, Apr 10, 17 @ 3:10 pm
Winners and losers-Problem is not with individual choice. It’s the state funding one segment of services (institutional) with COLA and Step increases each year while virtually ignoring the other 95% of individuals supported in the community.

Frankly, it should not matter where a person wants to live. An independent body could figure out the level of government support based upon the individual’s needs. That person should then be able to take that funding to an institution or a one person Cila. No more for living in an institution and no less for living in a community Cila.

Figures are not misleading. $231k is the per person cost of living in an institution. If you move half the people out but do nothing to change operations, your costs will double. Without a concerted plan that reflects the choices that people want, institutional costs will continue to skyrocket.

Unfortunately, the Trump administration is looking to substantially reduce Medicaid funding for all services, both community and institutional. When this happens, the most expensive services will be the first ones to go. If you thought the Howe and Jacksonville closures were heartless, wait until federal Medicaid caps go forth.

Don’t you feel that people who work with individuals deserve to be paid better? Institutional direct care staffs are already at $15/hour. Why shouldn’t there be parity for community direct care staff?

Its not a bait and switch scheme. The state convinces families to accept a community placement today and neglects to tell them that nothing will be forthcoming to fund services in the future. This is attract and abandon.

Comment by BobO Monday, Apr 10, 17 @ 3:56 pm
Re CILAs. Talk to Equip for Equality and you will learn that for years they have sought to sound the warning bell on problems in CILAs and the state did not take adequate action. Failing to understand that EFE is looking at SODCs AND the CILAs AND jails/prisons AND nursing homes is pretty much when you reveal your own blinkers. Trying to shoot them down when they provided a warning is a great way to undermine your own cause.
It is totally correct to wonder what the hell the State spends DD dollars on. The cost per person in SODCs is understandably outrageous to the thousands waiting for services on the PUNS list. There is obviously a prioritization of FUNDING problem.
And for what it’s worth, there are now 14 states that have NO state-run institutions for people with DD (SODCs). We do not actually HAVE to have them.

Comment by Quill Monday, Apr 10, 17 @ 4:09 pm
=$231k is the per person cost of living in an institution.==

That is simply false. First, no one figure is true at each of the separate SODCs in Illinois. Second, DHS adds in all sorts of SPI overhead to come up with higher figures for SODCs, but does not do the same for CILAs.

Quill - Equip for Equality warned about funding, they did NOT do the individual inspections and individual reports (with rare exceptions) on the CILAs. If they had done their job, the Chicago Tribune would not have had to spend months and months in the research of abuse and neglect at CILAs.

37 States DO have SODCs, and 2 of the 13 States (D.C. is not a State) are considering re-opening SODCs, and most of the other 11 States have large PRIVATE facilities.

Comment by winners and losers Monday, Apr 10, 17 @ 4:20 pm
It’s not just a typo…it’s misspelled in the web address too “http://www.equipforequality.org/news-item/judicial-intervention-sought-force-illinois-provide-critical-resourses-people-developmental-disabilities/”

Comment by Anonymous Monday, Apr 10, 17 @ 4:34 pm
Let’s just stop the game of institutions v. Community based. We need the full range of options. No one size fits everyone. While I may enjoy a single family home in the suburbs my sister likes a town home, my daughter likes sharing an apartment with a friend and maybe one day my parent will be in a nursing home. The fact that Illinois has a higher proportion of people with I/DD in state institutions and it is very expensive supports is indisputable. Private agencies, unions, state employees, advocates, consumers and families just need to work together to improve lives for everyone with I/DD.

Comment by Hopeful Monday, Apr 10, 17 @ 6:10 pm
Hopeful: AMEN

Comment by winners and losers Monday, Apr 10, 17 @ 6:43 pm